Mayo Clinic Connect
Is anyone one discussing this diagnosis ?
Liked by Teresa, Volunteer Mentor
Welcome to Mayo Connect. My name is Teresa and I am a volunteer mentor on Connect. I appreciate you bringing up this topic.
I have not seen anyone talk about this on a post, however, I did look up some information on this PD related disorder on the WebMD website. Here is the link, https://www.webmd.com/parkinsons-disease/tc/parkinson-plus-syndromes-topic-overview#1. As WebMD tends to give user-friendly explanations this might help explain to our Members what Parkinson's Plus MSA is all about.
If you are comfortable sharing more, could you tell us if this was a recent diagnosis for yourself or for a family member/friend? If so, please share with us how this diagnosis came about and what symptoms were experienced.
At Mayo Connect we all learn from each other. I look forward to hearing from you again.
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Liked by Lisa Lucier
What is MSA???
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Here is the link I provided in the above post that will explain it a little, https://www.webmd.com/parkinsons-disease/tc/parkinson-plus-syndromes-topic-overview#1
Looks like a Parkinson's-plus syndrome with multiple system atrophy. Thanks for the link you've shared, @hopeful33250 Teresa. Hoping some of our other members you've tagged might have some experience or knowledge of this particular syndrome.
I'd be interested to hear more about what you or someone you know might be experiencing with this, @pammettee.
I was noticing that other Members have not joined this conversation which must mean that we don't have anyone in our group who has this diagnosis.
I have been thinking about you, though and wondering how you are doing.
Please feel free to let us know if you have acquired any information regarding Parkinson's Plus MSA from a doctor other professional.
I look forward to hearing from you again.
I was wondering if you have received any more information about Parkinson's Plus MSA. If so, I would like to hear from you.
I hope you are doing well. If you are comfortable doing so, can you share more about yourself or this disorder?
My husband has this disease. He was diagnosed with MSA-C in Sept 2018. He showed signs of something being wrong about 21/2 to 3 years before the diagnose.
He started having a problem with his speech. Was having a hard time forming words. We 1st went to his GP who sent us to a nuero dr.. He was no help at all. We went back to the GP and was then sent to neurologist in Rochester NY who specializes in movement disorders. After seeing Dr. Barbanno for 1 1/2 years and another MRI it was conclude that my Husband has MSA-C. The "hot cross buns" showed on the MRI. Lou, my husband, did not respond well to PD meds and was getting worse FAST.
He does not have any tremors. His symptoms are problems walking, gait, swallowing, eyesight, muscle coordination, urinary mishaps, REM sleep disorder. The latest to add to this list is acid reflux in the middle of the night. He sleeps with the head of the bed up but there are time when I have to change the bedding the next morning.
Things that help are physical therapy and speech therapy. In short EXCERSICE. We have made changes to somethings like drinking from water bottles so if he drops it or it gets knocked over spills are small. Hard chairs in the dinning room and by the bedside, shower stall put in the 1/2 bath, chair lifts, railing for stairs, etc. Yes this list will get longer as the disease progresses.
I would like to extend my sincere sympathy to anyone who has this disease. There is no cure yet.
If anyone would like anymore information on my experience with Lou please let me know. So little is known about MSA and it is so hard to find any support groups because of its rarity.
I am sorry to hear about your husband's diagnosis. I do admire all of the changes you have made in order to accommodate his symptoms. You have really worked hard to help him with the adjustments needed to your home and to him individually.
Has your husband been checked by an otolaryngologist for the speech problem? An otolaryngologist can take a look at the vocal cords with a scope and that might provide some new information and/or help. I have PD and also a paralyzed vocal cord. There are some specific treatments that can help with such as speech therapy, which you have already mentioned, as well as vocal cord injections. It might be worth a visit to an otolaryngologist just to see if more help can be provided to the speech problems.
I really appreciate your willingness to help others sort through this rare problem. Mayo Connect also has a Caregiver's Discussion group that you might find helpful. Scott, @IndianaScott, is the volunteer mentor of that group. Here is the link to those discussions, https://connect.mayoclinic.org/group/caregivers/.
Will you post again?
Hi, @pcolunio – wanted to add my welcome and also congratulate you for doing a lot to take care of your husband at this time.
@lsdempsey – you'd asked about what MSA is previously, and @hopeful33250 provided some information. For anyone else who is interested, MSA is multiple systems atrophy, and in the case of @pcolunio's husband, it's specifically MSA-predominant cerebellar ataxia (MSA-C). Here are two sites with further details about MSA types https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153 and https://www.multiplesystematrophy.org/about-msa/types-and-symptoms/.
Hoping @pammettee, who was seeking others who might know about multiple system atrophy (MSA) through Parkinson's plus MSA, and also @johnjames @trouble4343 @ggopher might join in to help provide you support and input on your journey.
How is the recent acid reflux you mentioned your husband was experiencing, @pcolunio?
Better! He increased the head of his bed and made some changes to his diet. The Dr. has him on an acid reflux medicine. His breathing and walking are getting a lot worse. I just try to take one step at a time.
It would be great to share information with others. I would not feel so alone. The more exposure the disease gets the better.
Liked by Teresa, Volunteer Mentor, Lisa Lucier
So glad to hear of some of your husband's improvements, @pcolunio. Yes, I do understand how sharing information with others would help you not feel so alone. Have you checked into the Caregiver's discussion group here on Connect yet? Here is the link to those discussions, https://connect.mayoclinic.org/group/caregivers/.
While you may not find others dealing with the specific disorder that your husband has, most caregivers have similar concerns and I think you will find support there.
I am glad to read of your husband's progress, and hope with my heart that he has continued to have successes with things. After many, many…many tests and evals, my mother was diagnosed with this disease. I am happy to share our journey or answer any questions that I can. Blessings.
@hoard – welcome to Mayo Clinic Connect. You mentioned after many tests and evals your mother was diagnosed with Parkinson's plus multiple systems atrophy (MSA). Was it difficult to get a diagnosis for her?
I would like to join @lisalucier Lisa, in welcoming you to Connect. I'm just wondering if your mother was diagnosed with Parkinson's prior to being diagnosed with MSA? Often the two can be similar, especially at first.
Is your mom involved in any therapies (physical or occupational)?
Thank you! My mom was not actually diagnosed with the Parkinson's part, but the cerebellar ataxia bit. We went to U of Iowa hospitals for several baselines before coming to Mayo. They had several initial diagnoses including alcoholism (nope), stress disorders and low blood pressure, which explained the dizziness. They told us later that she was difficult to pin down because of how slowly the disease was progressing (much slower than the expected rate, apparently). There were many symptoms of Parkinson's present, but they ruled that out fairly early on. I noticed weaving and slurred speech, as early as 2009, but I know she was presenting with confusion, poor coordination, specifically handwriting, as much as a year to 18 months earlier than that. She passed away February 2018, a fierce spirit to be sure. Of course there is an ocean liner of things I have left out, but again, if our experience can be of any help, I am happy to share. I wish I had known about this platform for answers or direction.. or just support!
To answer the last bit, yes, she did physical and occupational therapies – recumbent biking, walking of course, dexterity balls for her hands and fingers… continued until the rigidity would no longer allow movement.
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